We've been busy!!!

Hi all! Sorry it has been a little while since I have posted but we have had the boys here in Ann Arbor with us and it keeps us plenty busy. Plus, my computer decided to not work all of a sudden so I have to post from the computers at the RMH and sometimes that can be tough to find the opportunity........29 rooms and two computers..........tough.
Before I forget to add this, I'm going to do it right in the beginning. My good friend Patti has graciously given me a link to a slideshow of all of the wonderful pictures that she captured on her visit to Ann Arbor a few weeks ago. She, again, did a fantastic job and we are so very lucky to have had her to take these precious photos for us. Enjoy! http://www.pattisportraits.com/clients/slide_show.php?viewGallery=1092

Update on Lindsay:
Well, we are in PCTU again because of a potassium issue. This time she had the irregular heart rhythms and a dip in her heart rate because her K was too high. So again we are going through the steps of tweaking her and so far so good. We received the phone call the morning before last and JR and I thought it was THE call. Talk about our heart rates jumping into a high level!!! It was 4:30 am and the doctor was just calling to tell us what had happened and that when we came to see her in the morning, that she would be in the PCTU for more monitoring. The good news is that none of this is a heart issue and just regulating her potassium. We have also started her on oral feeds again so that is especially nice because we haven't done that now for over a week! She will be on 60cc's every two hours for a few days and then we will get back to the 90 cc's every 3 hours. They also have backed down on her diuretics because she was really dry. She has also not been gaining weight like they want her to so hopefully with the diuretic every 12 hours instead of every eight will help. She needs to get beefy to prepare for that heart!!!!
Again, sorry it has been a while since I have updated. We sure do appreciate the continued support and prayers for our family. Keep them coming because my husband has an incling that the heart is coming soon. Let's hope he is right on!
Love you all!
Suzie

END OF THE YEAR TAX DEDUCTABLE DONATION

If anyone is interested in an end of the year donation (tax deductible!) to help the Dean Family, we're happy to say that we have the ability to facilitate that! If you're interested, please e-mail linda@wkzo.com for further instructions on how to do that.

Lindsay's story aired on WWMT TV Christmas Eve. Please visit http://link.brightcove.com/services/link/bcpid1111405973/bclid1137706675/bctid5750745001 to view her story. (HINT: to listen to the story, first go down to the playlist and pause the background music of the blog) Let's make it the most viewed video for Christmas Day!

The Lindsay Dean Heart Fund gave back to the community this week by hosting the American Red Cross Blood Drive, The Gift of Life, and The Morrow Foundation's Donor Registry sign up. We're happy to report that the Red Cross ran out of blood bags in spite of nasty weather and we had a record number of first time donors. We have been invited by the Red Cross to sponsor the next Parchment Blood Drive Feb. 17th. Please stay tuned to the blog for further information.

Coming soon.......Our Sweet(heart) dinner and silent auction in honor of our sweetheart princess, Lindsay, February 14th at St. Ambrose Church in Parchment. Please also stay tuned to the blog for further information concerning details.

Have a blessed Christmas Day!

The Lindsay Dean Heart Fund Committee

It has been the best day!

It has been a busy day but a great one despite not having our princess with us. The blood drive was a complete success and is actually still going on as we speak. So much so, I hear that a second date has been planned to get in all of the people that we couldn't do today. At total of 64 units were donated today! What a wonderful community effort.
We also just got done interviewing with News Channel 3 and Lindsay's story will be aired on tomorrow nights broadcast. Most likely at the 11pm time slot. Also, Patti (Lindsay's personal photographer) just made my Christmas! She has posted some pre-views on her blog so I urge everyone to take a peak. Just click on her link on the left to view them! Thank you so much for coming to capture these moments that we would have never been able to get otherwise.
I have also posted the video that was played while people were waiting at the blood drive.http://www.onetruemedia.com/shared?p=76f342f96fb68b30d5494b&skin_id=701&utm_source=otm&utm_medium=text_url
Just called and checked in on Linds and the doctors have decided to d/c one of her IV diuretics and do orally. She is a little on the dry side so hopefully it will help. Pretty sure that is will and then she will start to feeling like her self again. Mindy is with her again tonight and she said that she has started to smile a little bit more today.
I will update more later!
Love you all!
Suzie

Lindsay, Lindsay

Only used twice this time so must mean she is getting better! I called this morning and Lindsay has been sleeping very well and the continuous feeds are allowing her to get her much needed rest since she is a little under the weather. Her potassium this morning was 3.0 which is a little better but still not good enough especially since she is getting those higher doses every 3 hours! Hopefully we can get the doctors this morning after rounds and ask some more questions and what the next plan of attack is. Her nurse said that she went to take her blood pressure this morning, Lindsay rolled over and looked at her, smiled, and then went right back to sleep. Princess indeed! Hopefully she is more like herself today and then by the time we get back to Ann Arbor on Christmas day, she is her playful self. Man, I can't wait to see her!
Have a great day everyone! And, even if it is not Lindsay's blood drive, please, go give blood. It can save lives!
Love and heart blessings!
Suzie

Update on the princess

My last phone call was at 11:25pm and Lindsay had just had another episode of her heart rate going down into the 80's. She had also had another at 10:50 pm and they immediately drew another blood gas and her potassium was 2.4. Man, what is it going to take to get this potassium under control?! And wow, does she make it a point that she doesn't like us to leave!! Same things as happened the weekend before so we are wondering if it has anything to do with a fever, the fever breaking, and then she has these spells. It is as if her body gets regulated and working correctly again and then the potassium goes nuts because she then pees too much? I think I might get the on-call doctor on the phone tonight..................They also let me know that POD A is on call so we shall she if they decide to move her. I'm not thinking that that will be the case since we are during the week now. Last time was on a Friday night and POD A was the better decision because of staffing.
I will keep you all posted.
Love, Suzie

Home.....and allot going on!

At around 4pm today, the boys, including my husband :-), and I left Ann Arbor to come home for the Christmas festivities. I think that was the hardest thing yet. Leaving Lindsay to go to parties and open presents without her. I am just bummed tonight and trust me, because of it, I am calling constantly to check in on her!!! The harder thing though is that before we left, she had spiked a fever and was not feeling the greatest, we could just tell. She was pretty pale and was not her smiling self. Of course we spoke up and the nurse also mentioned at that time that she also hadn't slept allot. RED LIGHT!! What?!! Yep, she's getting sick. The nurse, whom we hadn't had before kind of looked at me strange and then said, "Let's take her temp again." Took it and sure enough, she had spiked. So, the whole process of cultures and then antibiotics begins. The other thing that the nurse had indicated was that she had been only keeping down 1/2 or 3/4 of her feeds. Well, in the past, if she had gotten sick, we sort of estimate what she threw up and then gave back to her what she lost. Simple thing right? Well, apparently it is now an issue so the poor girl has an NG back in her nose and will be on continuous feeds for 24 hours to see how she does. The problem is that they don't want her to end up getting dehydrated but my logic is that is you give back what she threw up, are we not helping to control that? Is it that she just doesn't feel good? or is it that mommy and daddy have the touch in feeding her? I think the ladder of the three but who am I? ha ha Anyway, we have one of our favorite nurses in Moderate Care tonight, Mindy, and we had a long discussion on what was going to happen tonight and for the next couple. That is the problem with the holidays and the medical field. Too many of our regular staff are off on vacation and then explaining things all over again to the ones taking over. Things get mixed up and not followed through with and just plain frustrating! Especially when you are dealing with a princess. Seriously, not just because she's cute either! Because she really needs things to be done just so and she has proven that time and time again. WOW, thanks for letting me vent! ha ha
The boys were not so excited to see the Grinch today at the hospital but they were certainly open to taking presents from him! ha ha We did get a photo with him that I will post later. Also, at the Ronald McDonald House, they had a room filled with gifts that parents could pick from for thier kids. We could pick one per child, wrap them, and then have them placed in our room so that when we got back to Ann Arbor, the boys will be excited to see that Santa didn't forget them there too! So cool and what a wonderful thing for RMH to do. Takes a little stress away for families I'm sure!
Tomorrow is a big day for Lindsay and the Dean family. Lindsay's blood drive is tomorrow and then in the afternoon, Channel 3 News will be here at the house to interview us about Lindsay and her condition to raise awareness about CHD's. I am really excited about this and looking forward to seeing people at the blood drive.
Hope everyone is staying warm!
Love, Suzie

The Princess is in the Christmas Spirit!

Today she has had a great day full of eating, continuously low potassium, and lots of holiday spirit. To try and fix the potassium issue, the doctors have decided to try her on a dose at 5 instead of 4 and then do a 4.5 dose every 3 hours from here on out to see if she maintains at some point. Hopefully this will work. The boys have had a great day as well. All of the Christmas things including a short visit with Santa himself up in the Family Resource Center at the hospital. Cole did the family project in the craft session and decided to make us a Christmas tree. He did a great job and Cruz even approved of his workmanship. We then came back to the house for some chores, Cruz had a nap, Cole played in the playroom, and then a church came in to make BREAKFAST for us tonight for dinner. Needless to say the kids loved it and now I am getting ready to go back to the hospital for some time with Lindsay and her next feeding. JR is staying back with the boys at the house to play with the new toys that they got from the party this afternoon. More pictures to enjoy!

Love to you all!

Suzie